Re: New To The Group mbrock (long post)

[Guest guest]

Hi (I am assuming that is your name):

Welcome to our group! I am sorry for your diagnoses,

but you have come to the right place to find people

who understand what you are going through, and who

will support you. We also have wonderful moderators,

and a, who keep us up on the latest medical

advances and treatments, and post medical studies,

sites, reviews, that are sooooo helpful.

It is perfectly normal to be scared. I have RA, OA

and Fibromyalgia. All disease is scary, and

autoimmune disease is so hard to understand and can

turn your life upside down so fast sometimes. No one

can tell you what the disease will do to your body,

and thus to your life, or how long this damage will

take to appear. Some people have very aggressive RA,

some have moderate RA. Some RA goes into remission,

but not many cases do this. I have what I would call

moderate RA. Not as bad as many, but worse than I

could ever have thought it would be, so moderate.

There is no cure, however, there are wonderful

medications out that, hopefully, will cause the

disease process to slow down, and you will not

experience much joint destruction, if any. I have had

RA for 8 years now, and on my x-rays I have no joint

erosions due to RA. I have pain, warmth, and some

swelling, but no real noticeable joint deformities. I

have some lack of motion and difficulty with movement.

I am very lucky that my first doctor began my

treatment immediately and aggressively upon my

diagnosis, and I credit this to my lack of deformities

or x-rays changes. I hope that this trend continues.

There is life after RA! Do not give up! I have had

to compromise on my activities to deal with the pain

and fatigue, but still do much that I enjoyed before.

I was able to spend more time with my family, and

don't take anything for granted any longer. I still

ride my horse at least once a week (body and weather

willing), down from daily riding, but still something

from my " old " life that I enjoy. It's harder to mount

and dismount, and I need help, but I love it. RA

makes it harder to do, and makes most things harder to

do, but you can adapt.

When I was first dx with RA 8 years ago, I was begun

on Plaquenil, Motrin and Prednisone. I stopped the

Pred about 3 months into my treatment, and was on only

Motrin and Plaquenil for almost 2-1/2 months with good

results. I made sure to get my 6 month eye exams

which are required on Plaquenil, but never had any

side effects, no problem taking the medication.

However, my RA became aggressive again, and I have

since been on many other meds. Currently, I am taking

Enbrel, Mobic, Methotrexate, and Ultram. This combo

is good for me.

Don't be afraid of the medication, beyond being

cautious. All of them will tell you every little

scary side effect possible because the drug

manufacturers have to cover their butts. Some of the

side effects like the retinal damage with Plaquenil

are very scary, but very rare. Just remember to get

your 6 month eye exams to make sure. I never had any

problem with that medication. Some medications I did

have problems with, and went on to others if the side

effects were something that I could not tolerate.

I hope that the Plaquenil works for you, but, if not,

there are others to try. It sometimes takes a while

to find that right med or combo of meds, but I hope

that you find it soon so you can get relief from your

pain. Learn to use rice socks, heating pads, ice, hot

showers or baths, whatever gives you relief. Learn to

ask for help when you need it. I hope that your

family and friends can learn to understand autoimmune

disease and what you are going through, but that will

take time too.

We are here for you, you are not alone, and we

understand. Whatever questions you have, we will try

our best to answer or point you in the right direction

to find your answers. Most of all, we are here to

support you and help you through this journey, your

good days and your bad days, ups and downs with

medications, treatments, doctors, and we talk about

family, friends, even pets. Keep coming back.

Hang in there and take care - Kathe in CA

--- erinmbrock <erinmbrock@...> wrote:

> I am 23 years old and female. I was just diagonsed

> with a combination

> of RA, Lupus, and Sjogrens Syndrome. I am scared

> and I feel like no

> one understands what I am dealing with. I just want

> to know what I am

> going to deal with. I was prescribed Plaquenil and

> I wondering how

> other people have reacted to it? PLEASE HELP!

>

>

>

>

>

>

>

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